Lulu was a bright, bubbly, and joyous little girl — a beacon of laughter, love, and endless curiosity. From her earliest days, she lit up every room she entered. With sparkling eyes and an infectious giggle, she captured the hearts of everyone around her. For her parents, Josi and her partner, life with Lulu was a beautiful, unfolding dream. Every moment was a memory, every smile a blessing.

But at just eight months old, that joy began to darken. Something wasn’t right.

What began as a seemingly ordinary fever — the kind parents often dismiss as teething or a mild infection — refused to break. Days turned into nights filled with worry. As Lulu’s temperature stayed high, her energy began to wane. Still, her parents clung to the hope that it was something minor, something manageable. But deep down, Josi’s instincts were telling her otherwise. Something more serious was at play.

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The Diagnosis That Changed Everything

After several visits to doctors and inconclusive tests, Lulu was admitted to the hospital. Initial assessments pointed to constipation, but her bloodwork soon painted a more troubling picture. Her iron levels were critically low. Despite repeated visits and further tests, there were no clear answers — only an unshakable sense that time was running out.

Eventually, Lulu was referred to Sydney Children’s Hospital in Randwick, a turning point that would bring the unthinkable into sharp focus.

There, scans revealed a tumour in Lulu’s abdomen — the size of a grapefruit. Even more devastating, the cancer had already metastasized, spreading to her bones and bone marrow. Lulu was diagnosed with stage 4 neuroblastoma, a rare and aggressive childhood cancer.

“Being told your child has cancer is every parent’s worst nightmare,” Josi recalls. “Nothing prepares you for that moment. Your world just... stops.”

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What is Neuroblastoma?

Neuroblastoma forms in immature nerve cells and primarily affects infants and young children. It is one of the most challenging childhood cancers to treat, particularly when diagnosed at a high-risk stage. The survival rate for high-risk cases like Lulu’s hovers around 50%, and treatment requires an intense combination of chemotherapy, surgery, radiation, and immunotherapy.

For a child not even one year old, the battle ahead was monumental.

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The Fight Begins

Lulu began chemotherapy almost immediately. At first, there was hope that the tumour might respond, that the treatment would shrink it. But after six rounds, her doctors were forced to deliver more difficult news — the cancer was not responding. The disease was aggressive, and it wasn’t letting go.

With unwavering determination, Lulu’s treatment plan shifted to high-risk protocols. Over the next few years, she would endure:

• 12 rounds of chemotherapy

• Major abdominal surgery

• A stem cell (bone marrow) transplant

• Radiation therapy

• Participation in a cutting-edge immunotherapy trial

Each procedure was grueling. Each hospital stay was a test of faith and endurance. But through it all, Lulu demonstrated a strength far beyond her years. Her courage astounded not only her doctors but everyone around her. “She’s my hero,” Josi says, tears in her eyes. “Even on the hardest days, she finds a way to smile.”

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Moments That Matter

In the face of such immense challenges, the family learned to cherish the smallest victories — a decrease in tumour size, a pain-free day, a rare laugh during a treatment break. These moments became lifelines, symbols of hope amid uncertainty.

Despite the exhaustive treatments, Lulu’s scans continued to show persistent cancer cells. Her disease, though managed, was not defeated. For Josi and her partner, life became a balance of fierce hope and heavy vigilance — always waiting for the next test result, the next clinical trial, the next potential breakthrough.

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Hope in Science and Innovation

There is no cure for high-risk neuroblastoma — yet. But the scientific community is racing against time to change that. Researchers are exploring promising therapies, including CBL137 combined with Panobinostat, which early studies suggest may improve outcomes for children with resistant forms of the disease. These therapies offer potential not only for more effective treatment but also for reduced long-term side effects — a critical concern for survivors of pediatric cancer.

Families like Lulu’s are relying on this momentum in research. Each breakthrough represents a new thread of hope — one that could tip the balance in a child’s favor.

But these innovations require funding, collaboration, and awareness. They require all of us.

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The Human Side of the Fight

Lulu’s journey is not just a medical battle. It is the story of a family reshaped by love, fear, and resilience. It is the story of sleepless nights beside a hospital bed, of birthdays spent in isolation, of explaining medical terms to a child who just wants to play.

It is the story of parents forced to live in a space between hope and heartbreak.

And yet, through all of this, Lulu continues to radiate light. At eight years old, she’s lived more life than many ever will — not in years, but in courage. She dances, she laughs, she dreams. Her spirit is indomitable.

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Why Lulu’s Story Matters

Lulu is one child, but her story echoes that of thousands. Every year, children are diagnosed with rare, aggressive cancers that receive only a fraction of research funding. Their lives depend on treatments that are decades old, developed with adult bodies in mind.

Her story is a call to action.

It’s a call to fund more research. To support families through the long, difficult road of treatment. To push for compassionate, effective care that prioritizes not just survival, but quality of life.

Because children like Lulu deserve not only a chance to survive — they deserve a chance to thrive.

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A Life Worth Fighting For

Today, Lulu’s family continues their fight. They celebrate every small win, knowing how hard-won it is. They advocate, they raise awareness, and most importantly, they love fiercely — because every moment counts.

Lulu's journey is a reminder of the power of resilience, the importance of research, and the boundless strength of love.

Cancer may test the body, but it cannot break the spirit.

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If Lulu’s story moved you, consider supporting organizations advancing neuroblastoma research. Every donation, every voice, every action brings us one step closer to a future where children like Lulu can grow up healthy, happy, and free from cancer.